AIDS 2012 Plenary Speaker: Linda Scruggs

Linda Scruggs.

Within two hours of her AIDS diagnosis Linda Scruggs was on a bridge ready to jump off but then she heard God, found faith and began helping others. Here, the programs director for AIDS Alliance for Children, Youth & Families, talks about breaking stigma, what it will take to end the epidemic among women and the power of telling your own story.

Q: Given the fact that at one point you felt hopeless, what does it mean to you personally and professionally to have been invited to speak at the International AIDS Conference?

A: I never would have imagined 22 years ago that I would receive the invitation on April 11th to speak at the International AIDS Conference. It wasn't a goal. It wasn't a plan. I had no clue, no inkling that my voice would have traveled so far that internationally people would say, "Yes, she's a person who can come and speak on behalf of women."

I read in an interview that you believe it's important that people have vision. What vision do you have for the HIV/AIDS epidemic among U.S. women and what needs to happen for it to come about?

It's reflected in the speech I will be giving on making women count. Twenty-four percent of the epidemic consists of women. We need better messaging across the board and scholars to come up with educational programs, training and innovative ways to connect women to their own health care. We need to get to a place where we have enough aggregate data available and reported to get stakeholders to provide funding and support. Getting to that vision is not just about the funding but about funding programs that work and are innovative and changing because AIDS is changing.

What must we do to raise women's voices, increase awareness of the epidemic among women -- particularly Black American women -- and support women's leadership in ending the HIV/AIDS epidemic in the U.S. and around the world?

We won't end AIDS for Black women or any women until we break the stigma associated with AIDS, change the human response to individuals with HIV/AIDS and make AIDS a normal part of conversations.

I'll give you an example. I went to my HIV doctor and I got on the elevator and this gentleman said, "Oh, we're going to the same floor." I said, "Yes." He said, "We might be going to the same doctor." I responded, "I don't know; I'm going to see my HIV doctor." He totally froze into the corner, but what had been was a real flirty moment until I said I was going to an HIV doctor. So we still have those responses in 2012.

You have been very public about your status. Why is it important for HIV-positive women to tell their stories?

I think as a woman it was important for me to tell my story so that the media didn't tell my story to my family. I didn't ever want my children, my family to think that HIV was yucky and ugly -- those were the visuals we saw. I only want to imagine that I got HIV during a time when I was having an incredible sexual moment. I made a decision that I must have been having a serious sexual experience, and therefore it wasn't yucky; it wasn't ugly.

What have you gained as a result of telling your story?

I think more than anything I've gained a sense of peace. When I started doing this I was 25 or 26 years old and pregnant. I needed to leave my son a legacy. The life that I had lived before hadn't given anything to this world. Now their aunts and their uncles will be able to say, "Your mother gave of herself, she helped this world."

What is your greatest hope for the conference as it relates to women?

Important things are happening. I really hope that the people, programs, providers and policy makers will make sure that women are a first thought in their programming and research.  For the past three decades we have talked about HIV in these rooms. And there is so much power, information and education in these rooms. But it has stayed in that space. As a consequence we have been negligent to the larger community.

April Eugene is a Philadelphia-based writer.